Frequently Asked Questions (FAQ) about Sickle Cell Disease (SCD)
Most Common Questions
What is Sickle Cell Disease (SCD)?
Genetic blood disorder that affects red blood cells shape, turning each normal round blood into a C shaped sickle cell. This speeds up the aging of the cells and makes it harder to deliver oxygen throughout the body.
What is Sickle Cell Trait (SCT)?
Having sickle cell trait means that you have inherited one sickle (abnormal) gene and one normal gene. This does not mean that you will have a sickle cell disease. BUT if you and your partner BOTH have the trait then you may have a child with sickle cell anemia.
Is SCD contagious?
No, sickle cell disease is not contagious.
What do I do if I have SCT?
Don’t panic! This means you only carry 1 copy of the sickle cell gene but do not have the disease. However, there are still a few things you should be aware of
- Know your family history – if your partner also has the trait there’s a chance your child will inherit SCD
- Stay hydrated – especially when exercising or in hot environments
- Avoid High Altitudes – a lack of oxygen can increase the risk of complication (talk to your doctor before you book any mountain hikes!)
- Get regular checkups – stay in contact with your health care providers! They will be able to help give you personalized guidance
What do I do if I have SCD?
If you or someone in your family is dealing with SCD please reach out to our clinic and book an appointment with us today.
Check out the different resources that the Sickle Cell Awareness Group of Ontario is offering to help support individuals and families living with SCD.
Screening FAQ
How is the test done?
A blood test that can check for hemoglobin S – the defective form of hemoglobin that results in sickle cell disease.
Wasn’t my kid tested for this already at birth?
All newborns in Ontario are screened for sickle cell disease, the screening does not routinely disclose the trait status. This creates a gap, as families do not receive crucial information about whether they carry the genetic trait or not.
How can I protect my family?
Knowing your sickle cell status is the best way to prevent sickle cell disease in your family.
What are the symptoms I should look out for Sickle Cell Trait?
Under some conditions you may be symptomatic, such as high altitudes, or pregnancy.
Talk to your doctor about getting screened for Sickle Cell Trait today or call and book an appointment today at (416)-629-1327.
What are the symptoms I should look out for Sickle Cell Disease?
Signs and symptoms vary from person to person. Here are some of the more commonly noted symptoms:
- Anemia or low number of red blood cells (RBCs)
- Frequent Infections
- Delayed growth (in both adults and children)
- Irritability or fussiness (in babies)
- Extreme tiredness or fatigue
- Swelling of hands and feet, associated with pain
Treatment FAQ
What does treatment for SCD look like?
Treatment looks different for everyone!! There is no single treatment that works for everyone. Here are some options:
- Hydroxyurea
- Pain management
- Blood transfusions
- Bone marrow or stem cell transplant
Are there any new treatments for SCD?
Yes, developments in treatment are ongoing and have shown promising results. Making it important to be in frequent contact with your healthcare provider.
Are there preventative treatments needed for SCD patients?
Yes, people with sickle cell disease are more vulnerable to infections. This makes vaccines for disease like influenza, pneumococcus, and meningitis more important.
Additionally, regular antibiotic prophylaxis and vaccinations are recommended, especially for young children with SCD.
What complications should be monitored?
Sickle Cell Disease increases risk for stroke, organ damage, infections, eye problems, pain crises, and acute chest syndrome. Regular check-ups & screenings are essential to monitor and prevent complications.
Can lifestyle changes help manage SCD?
While there is no cure through lifestyle changes alone, there are changes that can be made to help such as:
- Staying hydrated
- -Avoiding extreme temperatures
- Regular check-ups
- Managing stress
- Regular exercise but avoid overexertion
Talk to your HealthCare Provider Today about Sickle Cell Disease and see if you carry the Trait!
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References
1. Jenerette, C. M., Pierre-Louis, B. J., Matthie, N., & Girardeau, Y. (2015). Nurses’ attitudes toward patients with sickle cell disease: a worksite comparison. Pain Management Nursing, 16(3), 173-181.
2. Kato, G. J., Piel, F. B., Reid, C. D., Gaston, M. H., Ohene-Frempong, K., Krishnamurti, L., … & Vichinsky, E. P. (2018). Sickle cell disease. Nature reviews Disease primers, 4(1), 1-22.
3. Naik, R. P., & Haywood Jr, C. (2015). Sickle cell trait diagnosis: clinical and social implications. Hematology 2014, the American Society of Hematology Education Program Book, 2015(1), 160-167.
4. Ontario Health Quality Standards for Sickle Cell Disease. (2023). Retrieved from: https://hqontario.ca/Evidence-to-Improve-Care/Quality-Standards/View-all-Quality-Standards/sickle-cell-disease/The-Quality-Standard-In-Brief
5. Rees, D. C., Williams, T. N., & Gladwin, M. T. (2010). Sickle-cell disease. The Lancet, 376(9757), 2018-2031.
6. Munroe, M. 2022. The need for race-based data in Canada. University of Toronto Medical Journal.
